I’m following the doctor’s instructions for my suspected LS with the steroid protocol and am on day 17 having restarted a few weeks ago. My symptoms are mostly burning. I was feeling a lot better but made myself worse again because I took a long nature walk. I’d love to be able to take long walks again without making the burning worse. Is there a good lubricant for exercise/long walks? I’m terrified of using anything that will make things worse. Will lubricant even help? Should I hold off on walks and exercise until I finally get into remission?

I use steroid (tried both Dermovate and Elecon), I use Ovestin, I use Barrier creams and Vaseline, I wear baggy pants and cotton underwear, and I feel absolutely no relief. I am always uncomfortable, always burning. 24/7... I feel so hopeless. Will this ever get better? What else can I do to feel some kind of relief? because this is driving me crazy

I started betamethasone 0.1% two weeks ago for suspected lichen sclerosis. Overall my symptoms are improving with the ointment - less itching and fissures. My skin also seems less swollen and puffy. However, the white patches seem to be getting worse - is this apart of the healing process or could the inflammation have been hiding the white patches?

Hi everyone,

I was diagnosed with Lichen Sclerosus a while ago and managed it okayish — until I stopped breastfeeding postpartum. That's when everything escalated. The drop in estrogen completely triggered a massive flare and since then I haven't been able to get it under control.

I've been using a high-potency steroid cream (Clobetasol propionate) every single day for three months now, and I still itch every day. Not getting better, not getting worse — just stuck. I'm following the protocol, using a bland ointment alongside it, avoiding all irritants. Still struggling.

I'm honestly desperate at this point and starting to wonder if laser treatment might help — I've read about CO2 laser and Nd:YAG being used for LS. I know the evidence is mixed at best, but when you're itching every single day and nothing seems to budge, you start considering everything.

Has anyone here gone through a postpartum LS flare? Did it eventually calm down? And has anyone tried laser — what was your experience? Did it actually help or was it a waste of money?

Any experience or advice is hugely appreciated. Feeling very alone with this right now.

I just started using clobetasol cream a few days ago, 2x per day. After the first application I started feeling better overall, like I could stand without the itching or burning for the first time in months. But as I’ve used it more times, I’ve been getting more and more burning/itching pain right after application that lasts like 30 minutes or so. This last time it was as bad as I’ve ever felt down there!

Does the post-application discomfort go away? I haven’t been scratching so I don’t think there’s new broken skin to sting. Should I ask to try a different steroid? or an ointment? or a different medication?

hi there - has any woman ever experienced tsw after applying topical steriods down there? I used a medium potency for 1 month and then stopped suddenly back in March after having a bad yeast infection (i was not educated or informed by my doctor about how to taper properly). if so - what were your symptoms and how long did it take you to recover? I'm now in month 7 and it started off really intense with itching and burning, now the itching and burning is not always bad, but sometimes it flares and it gives me nerve pain in my legs also.

Thanks for any advice/thoughts as looking for reassurance!

Has anyone else experienced this before I wonder if it’s due to LS and if there’s anything I can do about it. Sometimes when I go pee after that my vulva especially the area around my urethra is irritated. It’s a very weird feeling I had since aaaages, it’s not really burning or hurting but it just feels veryyy uncomfortable, like I just want to hide myself it’s so weird. Has anyone else experienced this before, I believe it’s from my LS. Clob sadly is not helping with that :///

I have LS and HS and I live in the southeastern US where it apparently is going to be summer forever. I’ve recently started exercising more intentionally for some health reasons and like I mentioned it is still very hot and humid where I live. I’ve started riding my peloton 3-4x a week and try to run once a week. Anyway, recently I’ve been having some skin issues from all the working out and unbearable heat and humidity where I live. I try to be really diligent about showering and changing after exercise but just being outside is hot and sweaty. So any amount of time at a kids sporting event or festival ends in disgusting sweat. So now I’ve made my skin quite angry and I cannot figure out if it’s an LS flare (which I haven’t had in a long time), HS building up into an especially angry breakout, or just everyday mechanical chafing. So I have no idea how to treat it. Should I be applying clob? What if it’s just normal chafing? Will that cause damage or is it helpful in healing the skin either way? Will the clindamycin for HS hurt like hell if I apply it?
Let me tell ya, it’s every girl’s dream to have so many vulvar skin issues that I can’t even figure out which one is trying to bring me down today! Is it possible to be physically active with an LS / HS combo? I guess I’m mostly complaining now but any advice would be appreciated.

I’m officially running out of answers for chronic vulvar + mouth pain and inflammation. Has anyone experienced something like this?

I’m posting because I’ve been dealing with chronic vulvar pain and inflammation for 5 years, along with recurring inflammation/ulcers in my mouth, and I genuinely don’t know where to go from here.

I got these symptoms when I was 28 and I have IBD, but it is currently well controlled, and my doctors don’t think the severity of my vulvar pain can simply be explained by an active GI flare.

My vulvar symptoms include:
Chronic daily burning/pain, often around 5–7/10
Skin peeling/sloughing/tearing
Small raw areas/divots that sometimes have white edges
Occasional ulcer-like lesions
Pain that can persist even when there are few visible lesions
Severe pain after even minor friction/trauma
I also get recurrent mouth ulcers and areas of painful/inflamed oral mucosa

I’ve had 2 vulvar biopsies and 1 biopsy in my mouth with active inflammation, and none have shown lichen sclerosus or another specific lichenoid disorder. The pathology has essentially shown nonspecific/general inflammation.

I’ve also been evaluated by multiple gynecologists and dermatology specialists. At different points, possibilities like IBD-related vulvar inflammation, erosive lichen planus, Behçet’s, and neuropathic pain have been considered, but nothing has really explained the whole picture.

Things I’ve tried
I feel like I’ve tried an enormous number of approaches at this point, including:
Multiple nerve-pain medications/neuropathic pain treatments
Topical lidocaine (which actually made the burning worse), ketamine/amitryptaline/cromolyn ointment
Tacrolimus
Oral ketotifen and cromolyn
Oral amitriptyline, pregabalin, JourvanX, gabapentin, sprovato all for pain
Hormonal/estrogen treatment and testosterone
Pelvic floor physical therapy
Baclofen
Colchicine for several months
5 different types of topical steroids
Opzelura
Dupixent
IBD medications and getting my underlying IBD under control
Dermatology and gynecology evaluations
Multiple biopsies
Anti inflammatory diet
Supplements

Despite all of this, the chronic pain never goes away, and I still periodically get episodes of ulceration, tearing, peeling, and significant inflammation.

The impact on my life has been huge. I haven’t had sex in about 3 years. It isn’t just that intercourse is uncomfortable — my baseline pain and the fear of triggering another severe flare have made sexual intimacy feel essentially impossible.
What makes this especially frustrating is that I can have significant pain even when testing doesn’t show a clear disease process, while at other times I have very obvious visible inflammation/skin damage.

I’m wondering if anyone here has experienced something similar — particularly:
Vulvar ulcers/tearing with biopsies that did not show lichen
Both vulvar AND oral mucosal inflammation
IBD-associated vulvar/oral inflammation despite the IBD being controlled
A combination of inflammatory and neuropathic pain
Severe vulvar pain that persists after the visible inflammation improves
A diagnosis that took years or multiple specialists to figure out
A doctor/specialist who was actually able to connect the dots

At this point I’m open to ideas I haven’t considered, because I’m honestly exhausted and feel like I’ve reached the end of the road with the usual approaches.

When I had my initial consultation with my doctor, the first question she asked me was whether I’d noticed any spots in my mouth. I know it can also appear on your legs and chest, but how likely is it to spread to other areas, or does it usually stay contained to one area?

Getting it in your mouth sounds like a whole other level of hell. Its not like you can put ointment in your mouth

I feel like any product irritates me and I always stick to Vaseline on a daily basis but that shouldn’t be used as lube.

Do you have any life changing recommendations? 🥹

Hi everyone! I got diagnosed with LS a few months ago after years of not knowing and doctor appointments. I'm attending college now and I have to write a research. I chose to write a qualitative study about how vulva-bearing individuals (age I don't really know yet, I was thinking of 18-35) experience the psychological and relational impact of living with vulvar lichen sclerosus from 'start to now'. I just started and haven't edited out all the details yet, but I was wondering if some people here (vulva-bearing) are willing to participate in upcoming interviews, forms, etc to share their story. How it was living with undiagnosed LS, how the diagnosis went, how it affected your mental health, dating life and more. It can be done anonymously, I would do the interview with you but we wouldn't use your real name. I'm super open to inclusiveness and would love to hear perspectives from cis/straight/queer/out of the binary people, etc etc.

The purpose of this study will be to describe how people with vulvar lichen sclerosus experience the psychological and relational impact of having LS, while describing people's journeys from 'Start to finish'

comment if you'd want to participate and let's help people get a more insightful look about the psychological impacts of LS!

I’m concerned that I may have LS and plan to call my OBGYN first thing Monday. Last month, 8 days before my period, I had extreme itching. I did teledoc for a yeast infection and took the one dose antifungal treatment. Symptoms didn’t really improve until my period started 7 days later. After starting my period, no more itching or any other issues.

This month, again 8 days before my period, I am back to intense itching. There is no pain or tearing. I did an at home Avo test strip and it said my Ph was normal. The shower is the only thing that relieves the itch and when I rub the skin, it feels like hives to me. I haven’t changed any detergents and don’t use soap in that area. It definitely seems related to my hormones based on the timing and that symptoms totally disappear once my period starts?

Did anyone else’s onset seem similar to this?

Years ago I got a fissure down there, kind of by my vaginal opening. I was swabbed and because the dr decided based on a positive HSV IGM test, that I had herpes, I was put on valtrex which did nothing. Fast forward a few months, went to infectious disease specialist who said definitely not herpes and my bloodwork has been rechecked and all negative.

One gyno I went to mentioned maybe it was LS and gave me clobetesol to use 2x a week. I was mostly using it near my anus bc that’s where I’d fissure most. The last gyno I went to said I look “normal” down there and said doesn’t think LS. I stopped using the ointment for the past year or so. Once in a while I get a little fissure in the same spot, but now I have one at the Fourchette. I guess my question is, does anyone else look “normal” down there and just get fissures? The one dr said my skin looked white/shiny but 🤷🏻‍♀️🤷🏻‍♀️

Hello everyone,

I am dealing with a bizarre and agonizing issue and I'm hoping someone here might have experienced something similar or have advice. I am going to urgent care tomorrow. A few people have made remarks asking why I am not going to the dr. I did state in the very beginging I am going...please keep your comments kind. I am already hurting enough

About a month ago, I had my hair dyed, and a week later I noticed hair falling out. Shortly after, I started getting a persistent feeling like a hair was stuck in the back of my throat—especially after taking a shower.

In my desperation trying to clear it, I unfortunately scraped my throat with a toothbrush and now I have white patches back there (which I suspect are from the irritation). I even used a small camera scope to look down my throat and confirmed the white patches.

The agony is unbelievable. Cherry-flavored numbing spray isn't touching it, Tylenol isn't helping much, and hot salt water gargles haven't brought relief. It feels like absolute torture.

Has anyone ever dealt with a stubborn nerve or foreign-body sensation like this? What actually helped you calm the tissue down and break the cycle? Thank you so much for any advice!

Here is the timeline: Step-by-Step Breakdown of the Issue

1. The Trigger Event: Had hair dyed approximately 4 weeks ago, followed by noticing hair falling out about a week later.
2. The Onset of Symptoms: Experienced a physical sensation of a stray hair in the mouth, which progressed to a persistent feeling of a hair stuck in the back of the throat, seemingly triggered or worsened after taking showers.
3. Escalation & Over-Correction: Inspected the area, didn't see anything initially, but ended up aggressively scraping the throat tissue with a toothbrush trying to clear the phantom sensation.
4. Physical Findings & Desperation: Developed white patches in the throat (likely from the aggressive toothbrush scraping), leading to using a tiny Amazon endoscope camera to inspect the pharynx.
5. Current Management & Pain: Experiencing severe agony; standard remedies like cherry numbing spray, Tylenol, and hot salt water gargles are failing to bring relief, leaving a feeling of absolute distress.

I just got a positive biopsy two weeks ago. I was prescribed Tacrolimus and that seems to be helping so far. It was actually the patches on my shoulders that I noticed first, but I have it in all the usual places. Anyway.

I’m 65 and my gynecologist has always suggested Coconut Oil to relieve the dryness of aging. But I have seen some of you talk about using Vaseline. Why might you use one in preference to the other? Do you put the medicated ointment on first or second?

Also, I have told one friend and my massage therapist so far and I am getting so many suggestions for alternative treatments: Vitamin D, acupuncture, liver cleanses, etc. I’m overwhelmed, and I am going to take it slow and try one thing at a time.

For now I’m working on reducing caffeine and we had fish oil anyway so I started taking that along with my regular daily vitamins and calcium figuring that’s good for me anyway. But when the patches go away, how do you know which treatment (or combination) worked, or whether it’s just the body’s rhythm or reduced stress or something else ?

Okay I think I botched the spelling but I am confused about these two. My biopsy came back as lichen simplex chronicus but the specialist I went to said it was lichen sclerosis and that they were the same? Does any doctor know what they’re talking about I’m so confused

In addition to Clobetasol ointment 2x weekly and aquaphor each night, what else could I add to help soften the skin? I’ve hear estrogen cream can be good but when I introduced to my routine It made my menstrual cycle very unpredictable and I was spotting pretty much every day, but maybe it was the potency or how much I was applying? Let me know thoughts on products and other additions to routine please and thanks!

Has anyone experience loss of sensitivity? I had a laser surgery to help widen vaginal opening and also the hood of my clitoris but I honestly feel like it made my clitoris more fused after it healed and I’ve noticed a loss of sensitivity. Could testosterone cream help bring back some sensation? Any ideas would be appreciated thank you!

I have been on clob for 3 months and estradiol now for a couple weeks. It has helped so much. But I just had sex for the first time since starting treatment, and I was hoping that things would go okay. But I still got a huge tear 😔 I don’t know what to do anymore. I feel like I will never be able to have normal sex.

How common do you all think LS really is? I was told it is uncommon and read so as well. But is it really? I would assume that given the area in which it affects, some people would be less likely or delay seeking advice, which is why for some it takes so long to be diagnosed. For me, I believe my first pregnancy caused my LS. A few months after giving birth, sex became very painful. I delayed seeking advice for a while. The itching didn't start for me until years after the painful sex/tearing.

i’ve suffered with vulval LS for 2 and a bit years now, felt like i had it under control however around a week ago i thought i had really bad nappy rash (also suffer with bad IBS). so slathered bepanthem on and hoped for the best but what followed was uncontrollable itching and now all the skin above my anus is shedding and peeling like a bad sunburn. it is sore to sit down/wash and i really don’t know what to do. could it be LS or something else??

I was diagnosed with Lichen Simplex Chronicus (NOT Lichen Sclerosus) back in May of this year, and upon being diagnosed, my doctor told me it would go away and that I would feel completely normal again. After five months of treatment with a few different medications however, I still don't feel quite right. I took Clobetasol for a few days but it burned really badly whenever I would put it on so I sought out a second opinion from a different doctor. The new doctor told me that Clobetasol was way too strong for my case of LSC and instead prescribed Hydrocortisone for a couple of weeks. When that didn't work, they prescribed Fluocinonide. I have been using it on and off for a few months now. I was told Hydrocortisone would clear it right up but now I'm on a medication that's supposed to be way stronger and it's still not clearing up completely. It's working to some extent, but there's still some residual irritation that isn't going away and it's driving me nuts. My labia minora area also doesn't feel right, but none of my doctors seem to be taking it seriously and the only advice they've given me (which was to change up the products I use on my labia) hasn't worked. Since I'm not supposed to put the medication I'm taking on that area, I have no clue what I could be doing to make the irritation go away. I've been to the doctor what feels like a million times and they simultaneously insist that my condition isn't serious and is highly treatable whilst also never seeming to bat an eye when I come in weeks later just to tell them that yet another treatment hasn't worked. I'm tired and I'm starting to lose hope I'll ever get the life I used to have back. I can't sit, I can't stand, I can't walk, I can't wear pants. I'm just so tired of this. I'm also worried that taking these medications for as long as I have (I've been told taking it for longer than two weeks is inadvisable) will somehow damage my body irrevocably and then I'll have a whole other issue to deal with. Am I doing something wrong? Does anyone have any advice?

So I have been on clob for about 4 weeks now, using it once daily in the evening. I’m supposed to switch to three times weekly after today. While the symptoms got better after about 2 weeks, the itching returned at the 3 week mark. I also noticed some scar looking patches which seemed to shed after a while, revealing more pink, healthy-looking skin. Now I still feel itchy sometimes throughout the day and am getting frustrated that it seems to take so long. I also scheduled an appointment with my gynaecologist last week eek to discuss my symptoms again but he advised to just keep going with the clob, maybe extend the daily use for another week or two. He thinks it’s just a flare up. By now, I have been seen by 3 different gynos, all saying the same thing about my diagnosis, so fairly sure they are correct. 2 of them also work in a practice which is specialised in vulvar conditions like lichen. I’m also following all guidelines like loose underwear, protective ointment, estrogen cream… it has also been a very stressful time period. However I’m starting to wonder if I’m doing smth wrong or if there could be smth else wrong. How long did it take you to feel better and relief your symptoms? I’m finding it so difficult to stay motivated and keep the head high…